I have already been weepy for the past 6 weeks over this birthday. I’ve tried to prepare myself for years, but it still sneaks up on me.

Sixteen years ago, as a naïve first-time mother, I made the horrbile mistake of not retaining the pre-natal services of a licensed obstetrician. The ensuing nightmare from that decision has haunted me ever since. Jordan and I will pay for that miscalculation every day until either one of us draws our last earthly breath. I have paid the ultimate price with her life; I pay a price in my relationship with Blake; I pay a price with a physical body broken by stress and pain. There is no peace, and I don’t know that I’d deserve it anyway if there were. I alone must atone.

It still pains me that Jord will never drive, date or go to a dance. Those are major milestones for a reason. She’ll never even know what they mean.

Her brothers are growing up without her…

We miss the happy Jord we knew before her needs outstripped her communication abilities.

The care center is not our favorite option but it is the best one for now. At least she is generally loved even though she can be difficult.

I still ache every time we drop her off after a home visit. Tears are never very far from the surface…

My girl is maturing too much to be without a mom’s guidance. She doesn’t need her gorgeous womanly figure. I wish we could have frozen her at the age of 5.

I still wish I had the girl I dreamed about 16 years ago. I live with what is but I want so badly for things to be different. I wonder how we’d be celebrating this birthday if they were…?

I was at a local medical plaza a few mornings ago for a doctor visit. In the lobby I saw a couple with a newborn daughter hooked up to tubes powered by the pack on the mother’s back. I wondered if this young, shell-shocked couple had the first inkling of how completely their lives will be changed. I sent silent karma their way as I recomposed myself for my appt.

After a few months of smooth sailing, our intrepid little SV Jordan has hit another patch of rough sea. Often we never know what brings on the storm. Jordan has been a bit more irritable the past week or so, but we received a call from the care center tonight that she became frustrated after a phone call to Mom and began hitting her head on the floor. She has never done that before.

Jord likes to call home each day to hear Mom’s voice. Generally that will calm her. Lately it has caused escalating behaviors. Jord loves to be with Mom and Dad but is generally happy to return to the center. She recently lost one of her dearest friends and roommate when Kristi moved to Colorado to be near her parents. She has a new case manager. A new male resident who is younger than she is has rocked her equilibrium. And school is out for the summer next week.

She tries to process all this change without being able to talk it out. We provide as much validation as we can. We give her as much time as we can while still tending to her brothers’ needs. We are often at a loss as to where to even begin investigating how to help Jordan. Clues are not readily visible with her.

It is said that moms are only as happy as their saddest child. My heart is always very heavy. I feel so torn between the dimensions/tangents I live in. I know I’m not the only one, but it is still very challenging. Good thing for the therapy motorcycle…

After living with Jordan for almost 16 years I’ve developed a level of acceptance and detachment that helps me keep the grief at bay. I try not to focus on things she can’t do or is missing out on. Yet sometimes, out of the clear blue, something random will strike at that equanimity and rock me to the core. I’ve learned to handle the big things like birthdays and dances and driving. The little random things? Hmmm. Not so much…

I attended the Lehi Jr production of “The Pirates of Penzance” on Saturday with Jackson for a school assignment. The show was delightful and the highly talented kids did a fabulous job. The male lead was a 7th grade friend of Jackson’s, and he carried the play very well. What struck at my heart was seeing the performances of the 9th grade daughters of friends from our old neighborhood who were born within the year that Jordan was. I could not have anticipated the twinge that brought me.

Watching them was very bittersweet. I am so happy for their talent and success. I want to call their mothers and congratulate them on such poised and able daughters. Yet, I ache to have my daughter participate with them. So many emotions swirled through me during the 90-minute play. I know that Jordan has her own unique path, but I miss the normalcy that the school play represented.

Aside from that, Jordan is doing pretty well! We added Abilify to her pharmacology mix in December and it seems to be keeping the intense anxiety in check. Her behaviors at the center and school have really decreased. We had a Parent/Teacher conference with her teacher last week and Jordan is doing well with her tasks at school. She never wants to take a break, just keep working and learning. The speech therapist is trying to get her to use a communication board, but it often turns into a weapon when she is frustrated! We are happy she is finding a more stable place.

André Gidé is one of my favorite writer/philosophers. He has a way of a packing a powerful intellectual punch into a small aphorism. One of his quotes that guided me through the adventures of my college years was this:

Man cannotDiscover new oceansUnless he has the courageto lose sight of the shore.

Now that my life has changed substantially and I’ve seen so much of heartache and pain around me, I am guided by a new thought:

No one gets through this life unscathed. We all face anguishing challenges. I have decided I can no longer judge how people get through them. Life is messy, as one of Jordan’s therapists used to say. There are many things we can’t fix and often no good answers. Everyone struggles to find their own path. And for every human being on the earth there is a different path.

I have found that a black-and-white view of life leaves little room for compassion. We all have a story that no one understands but us. There is no one-size-fits-all answer to any human condition. Who is to say what brings peace to widely different individuals? I like living in the gray shades of life. I am comfortable knowing that truth is individual and personal. I view people with greater empathy.

Kindness matters. Understanding is social currency. Differences are good. Gray has an infinite variety of shades. Truth is what is in our hearts and how we treat others. Contentment increases when we embrace the gray and let go of the chastisement of ourselves (especially!) and others. Find the gray. It is a beautiful place to live!

At times I am amazed that this little girl still loves me! We have always had a tempestuous relationship. I have been a mediocre mother for her, at best. Yet, through all the stress and pain, she still recognizes the mother-daughter bond and desires to be with me.

Blake went to the center this morning for a regular Jordan psych/med evaluation and thought he’d take her to breakfast afterward. When Jord got in the car she immediately asked for “Mom-mom” like she always does. Blake explained that she’d see me another time. They pulled into the restaurant parking lot and she again asked for me. Blake told her no, it was just breakfast without Mom. He said she fell apart and wanted nothing to do with breakfast without Mom. They returned to the car and Blake called to say they were coming home. He said Jord grinned from ear-to-ear all the way home at the prospect of seeing her mom.

I feel like I don’t deserve her love, yet I’m grateful she looks past/does not remember the pain I’ve caused her. I want her so badly but do not want the disability. My weaknesses are greater than hers and she takes me as I am. I hope to be like her someday…

An evening or two after Jordan was born I remember standing at the window of my hospital room staring out into an interminable night. I was alone as Blake was at a neighboring hospital in the NICU with Jordan. I stood there pinching myself hoping I could wake up from this horrible nightmare. Everything felt surreal. Jordan was born at the beginning of a week of huge celebrations to commemorate the sesquicentennial of the Mormon pioneers’ arrival in the Salt Lake valley. The news was filled with community activities. I looked out the window that night and wondered how the celebrations could continue when my world had just stopped spinning.

Life has continued, but the world now spins on two different axes: one of home with the family, and one of Jordan. That separation is hard to live with. When I am in the Jordan world nothing else exists. She takes every ounce of energy and concentration I possess. When I am in the family world it seems as if Jordan does not exist. The meeting of the two worlds (planets colliding) hardly ever goes well. We are disrupted and tense and upset.

Blake and I have tried so hard over these past 6 years to maintain constant contact with Jordan. We see her twice a week, usually giving up our date night to do so. These nights are always stressful and leave us at odds with each other and Jordan. We see a flicker of change that makes us hopeful for our time together, then it all falls off the cliff for months at a time. When she hits and screams and spits in public it is very hard to find appropriate activities for our evenings. Blake is always so very good and patient during these times, but the past few episodes have left him shaken a bit. When Blake starts cracking I know the situation is bad. I am always weak but Blake is usually strong.

There are no answers in this situation, especially good ones. We hate it all the way around but our options are limited. We wish time travel were possible. I recently stumbled across this blog postwhich describes a birth very similar to Jordan’s but with a completely different outcome. I wish so very much that that could have been the end to our story. We have all paid dearly for the mistakes that were made leading up to and during Jordan’s birth, especially her. We are still standing at the window waiting for the night to end.